“The rollercoaster you’re on is a slow, downward spiral where you think you’re doing okay and then you find that ‘holy cow, I can’t concentrate the way I used to be able to,’” says Ms. Halas.

Photo: Peter Thompson/National Post.

Rita has been working as an administrative assistant at the same accounting office for 20 years. The springtime always brings a flurry of activity as the firm works to meet the tax-filing deadline for its clients, forcing staff to put in expected overtime.

But 2013 would be different for Rita. It would be the first year she had to approach her human resources department to request exemption from overtime. It was also the first year her time away from work grew to excessive levels — a full seven weeks. And that wasn’t for vacation.

Rita (who preferred to keep her last name confidential) isn’t taking time off because she’s ill. Rather, she is one of 2.3 million Canadians between the ages of 45 and 64 who work full time while serving as a caregiver to an ailing loved one. More specifically, she is one of about 700,000 Canadians caring for a family member suffering from some form of dementia.

It’s just all-consuming and so you ride the frustration, you ride the anger

The term “caregiver” may sound noble, but caregiving is beginning to take its toll on Canada’s workforce. The role caregivers play takes them on an emotional rollercoaster made up of feelings of grief, frustration, guilt, exhaustion, and an uncertainty about what to do.

Rita, who cares for her 89-year-old mother suffering from dementia, says her quality of life has degraded as her mother’s condition has worsened. “I don’t have any other life. I go to work and I come home,” says the 52-year-old, adding that she hasn’t gone for a walk in more than two years, feels “stuck” and has “become more stressed, argumentative and negative.”

According to a University of Alberta study released late last year, caregivers missed one or more days of work per month to provide care. Collectively, that amounted to 1.5 million days of missed paid work in Canada. That was in 2007. Today the number of caregivers has grown 20%.

Even while they’re at work, their minds are often preoccupied with thoughts of the person for whom they are caring. Those caring for loved ones with dementia have the added stress of fielding several panicked phone calls a day from an ailing loved one who feels the intense anxiety symptomatic of mental degradation and the need to cling to their caregiver.

The economic and professional impact is profound. Most caregivers have higher levels of absenteeism and presenteeism (being at work physically but not mentally), lower levels of productivity, a greater inclination to turn down promotions and/or scale back their work week to part-time hours. They’re also more likely to come in late, leave early and take extended leaves of absence.

“The rollercoaster you’re on is a slow, downward spiral where you think you’re doing okay and then you find that ‘holy cow, I can’t concentrate the way I used to be able to,’” says Sylwia Halas. “It’s just all-consuming and so you ride the frustration, you ride the anger.”

The 42-year-old teacher knows she’s one of the lucky ones. Unlike many professionals, she has her summers off and an employer who gives her flexibility to deal with the needs of her 67-year-old mother suffering from late-stage Alzheimer’s.

Still, like many workers, Ms. Halas has peak periods when the volume of work swells and she needs to be at her best. But that’s become increasingly difficult for her to do. “All of a sudden you’re mulling over the same thing; you’re looking at the same paper for 45 minutes,” she notes.

“There are a lot of them who are trying to manage at work while being preoccupied with what’s happening at home, or they’re managing at work while getting five or six phone calls of a panicky nature from their mother or father saying, ‘you’ve got to come home right away,’” says Dr. Sadavoy, noting the downward spiral intensifies as the condition of the person with dementia worsens and he or she loses the insight to recognize certain emotions even while the caregiver’s feelings of grief climax.

“Someone more poetically called it ‘a funeral without an end,’” he says.

Last summer, the federal government awarded the Reitman Centre a $2.84-million grant to use over five years to develop a support program for caregivers in partnership with the private sector. In addition to offering support for those currently coping with the stresses of caregiving, the Working CARERS Program is designed to serve as a model for the administrators of corporate Employee Assistance Programs (EAPs). The idea is to arm the administrators with the education and skills training required to offer caregivers tailored, practical counsel they can apply to their personal situations as a means of helping them cope and keeping them in the workforce.

“At the moment, employee assistance programs that are available have responses to caregivers but they tend to be generic, and what we’re trying to do is to create a more specific toolkit inside the business environment delivered through EAP programs where we’re actually providing the EAP services with tailored, specific intervention programs for the caregivers,” says Dr. Sadavoy.

A handful of organizations have already jumped on board, including BMO Financial Group, Mount Sinai Hospital and insurance company The Cooperators. About 350 people (including Rita and Ms. Halas) have already participated in the program (though not all are from those organizations).

I’m 52 and not getting any younger and not exercising anymore, and life is not going to be good for me

The Working CARERS program uses simulations through group sessions involving six to eight people to provide counsel to participants about issues they are dealing with at that given time.

Benefits administrator Ceridian Canada has been working with the Reitman Centre to turn the program into a scalable service that can be offered at a national level. Doing so, however, comes with a host of challenges, not least of which will be identifying the people who need the service within its client groups and communicating to them that the program is available.

“When you think about it, what we need to have before someone will participate is: it needs to be a locally accessible program; it needs to be targeted to individuals with caregiving responsibilities … to a loved one who suffers from dementia, and then it needs to be people who have the interest, ability, willingness to recognize that they may have some issues and require support, and that they’re willing to connect with the EAP to get that support,” says Estelle Morrison, vice-president of clinical and wellness services for Ceridian Canada.

Ceridian staff has been conducting a series of Lunch & Learn sessions at various organizations where they offer information about dementia and the support available to caregivers. Doing so has not only raised awareness of the Working CARERS Program, but has also served to break down some caregivers’ resistance to asking for help.

Ceridian’s strategy is to evaluate the program as it evolves, identifying the elements that will be effective and ineffective for the EAP service it hopes to roll out nationally.

One of the sticking points will be the program’s group format, which is uncommon within the framework of EAP services that are typically administered on an individual basis to ensure confidentiality.

“It brings a wealth of questions about confidentiality about support groups, about knowing that your work colleague is attending this group with you,” says Ms. Morrison.

Ceridian is hoping to have an EAP-accessible model it can offer well before the federally funded program ends in 2017, but the number of locations across Canada in which it will be available is difficult to say at this point. A web-based format is also being considered but its efficacy is still undergoing evaluation.

In certain cases, time will be a critical factor. Some caregivers, like Rita, are slowly resigning themselves to the idea their currently poor quality of life is a fait accompli.

“I’m 52 and not getting any younger and not exercising anymore, and life is not going to be good for me.”